Tuesday, April 3, 2012


No matter how many years go by and no matter how many battles under my belt, there are certain feelings that never really go away, no matter how deeply I might bury them. And it only takes a precious second for them to all come bubbling up to the surface again, as fresh and as raw as they ever were. in my case, it's usually the feelings of grief and longing for the life I dreamed I would have - the life that is so vastly different than the one I am actually living. I realize I am blessed in many, many ways. I was lucky to be born in this country, to loving parents, to have a large, amazing family and groups of friends. I was blessed with intelligence (sometimes), I am not too unfortunate-looking and I have musical gifts and talents that I get to share with people I care about.

And yet, every so often out of the corner of my eye I catch a glimpse of some life that never existed, some life that could have been a reality...if things had been different. And when this happens I cry, sometimes for days on end to the point where I am certain it will never stop. I cry for all the things I have lost and for the future which seems less bright than it used to. I cry because I am terrified of how this journey has changed me and I fear I won't like who I become if the path continues like this for years and years on end.

I mourn the loss of simpler times when among my greatest fears was having to kill a spider in the bathroom. Now I fear losing my health insurance, not being able to afford my medication and ending up paralyzed again. Well that, and the risk of a fatal brain infection from this amazing drug that I desperately need to be able to afford because it's really my only option at this point until other drugs get approved by the FDA.

I don't know many 32 year olds who have to worry about those things.

There's that old saying that if you and everyone you knew stood in a circle and threw all of your problems into the middle, you would look at everyone else's crapola and gladly take back your own problems to deal with.
Not me. No sir. I would leave all these diseases right there in that circle, take somebody else's problems and run like hell in the opposite direction.

Leave the MS for someone else to pick up. Yeah, you can have the cancer and the constant fear of it returning, too. And don't forget to take the Sjogren's on your way out - it's loads of fun in the spring when your eyes don't make tears to wash away the pollen.

I fantasize about escaping it all. I come up with creative ways to distract myself from the fear and longing and sadness. But every escape is only temporary, always far too brief and all my troubles impatiently await my return every time.

I dream of a place where there isn't any trouble.
Do you suppose there is such a place, Toto?
There must be.
Not a place you can get to by a boat or a train.
It's far, far away...behind the moon....beyond the rain...

No comments: